New here, may have a good story

[Truints]

Well lets start with the basics

Age: 19
Diagnosis at age: 12

Doctors said I more then likely had CD since I was a baby, and my mom backed that up reporting symptoms of it all through my childhood.

List of diseases and problems? why not.

Crohn's Disease
IBD
Anemia
Photophobia
Anal Fistulas(2)
rheumatoid arthritis
Ulcerative colitis


Okay so now that we have that out there so you don't have to search through my post and try and find a bunch of scattered stuff haha.

I had problems as far back as I could remember, constant diahrea( all the time literally). I thought it was normal so I shrugged it off and didn't say anything about it to anyone.
My stomach pains I also thought were normal, so I shrugged those off to.
Somewhere in my 12th year of life the pain became crippling and I honestly fell down and couldn't move.

My mom took me into the ER to get it checked, they thought my appendix was going to pop. I knew it wasn't.
They ended up doing a cat scan where they shuv a tube up your bum and fill your intestines with water to get a better view of your appendix(hurts like hell when having a flare up). Came out negative. So they did a few more tests and then we found a doctor that knew what was going on. He said Crohns, problem was he was in denver colorado. We were in gillette wyoming. So we took our 6 hour trip there and met with him(doctor yazdi or soemthing) Hes a childrens GI.

Well once I got there he stuck his finger in my butt(weird experience when your 12). and then he had me take 4 table spoons of fleet, drink like 2 gallons of water, and saw him for my first colonoscopy. from then I was put on some diet, some medication and was on the road to doing better.

Then when I was about 16 it decided to get really bad, after 3 colonoscopys I was going in for my 4th. at this time I had gone through like 8 different doctors and yeah you all know how that is. I had the most amazing doctor ever now. Cant remember his name atm(bad memory losses at random moments). well he put me in for a surgery and had taken 18 inchs total of my ilium and lower intestines out, he said they were in such bad shape it was like holding a steel pipe. I was in the hospital for 2 weeks being fed from a nutritionist through an iv that was put through close to my heart. and I was using the bathroom in a jug(it tipped over once, big mess).
But right after surgery they said it had gone well besides the fact I am anemic and They did 2 blood transfusions to no avail. So they fed my IV like 4 bags of iron. maybe more I don't remember much.

But that did help me alot, I felt better then I ever had in my life ever! No pain no nothing! So my doc started me out on humira which I took all up untill like december 09? well I ran out of insurance, that whole ordeal.

Ive been getting into worse condition again, one of my fistulas closed up, the other got worse, Im having flare ups again. My arthritis is literally starting to cripple me and I don't want to do anything. I just moved to Arkansas, and am going to get my licsense so that I can take some AE classes and get my ged and start some college so I can get back on my dads insurance and get this under control, it will also help get me on track for my own insurance.

I am trying to find a job atm and its not going well, along with trying to get into school.

Its taking forever and the pain is hard to cope with. Also Idk why but I have been super bi-polar for some reason, and I honestly cant take all the stress anymore.

Thanks for reading my post.

 

[Liam]

Well lets start with the basics

Age: 19
Diagnosis at age: 12

Doctors said I more then likely had CD since I was a baby, and my mom backed that up reporting symptoms of it all through my childhood.

List of diseases and problems? why not.

Crohn's Disease
IBD
Anemia
Photophobia
Anal Fistulas(2)
rheumatoid arthritis
Ulcerative colitis


Okay so now that we have that out there so you don't have to search through my post and try and find a bunch of scattered stuff haha.

I had problems as far back as I could remember, constant diahrea( all the time literally). I thought it was normal so I shrugged it off and didn't say anything about it to anyone.
My stomach pains I also thought were normal, so I shrugged those off to.
Somewhere in my 12th year of life the pain became crippling and I honestly fell down and couldn't move.

My mom took me into the ER to get it checked, they thought my appendix was going to pop. I knew it wasn't.
They ended up doing a cat scan where they shuv a tube up your bum and fill your intestines with water to get a better view of your appendix(hurts like hell when having a flare up). Came out negative. So they did a few more tests and then we found a doctor that knew what was going on. He said Crohns, problem was he was in denver colorado. We were in gillette wyoming. So we took our 6 hour trip there and met with him(doctor yazdi or soemthing) Hes a childrens GI.

Well once I got there he stuck his finger in my butt(weird experience when your 12). and then he had me take 4 table spoons of fleet, drink like 2 gallons of water, and saw him for my first colonoscopy. from then I was put on some diet, some medication and was on the road to doing better.

Then when I was about 16 it decided to get really bad, after 3 colonoscopys I was going in for my 4th. at this time I had gone through like 8 different doctors and yeah you all know how that is. I had the most amazing doctor ever now. Cant remember his name atm(bad memory losses at random moments). well he put me in for a surgery and had taken 18 inchs total of my ilium and lower intestines out, he said they were in such bad shape it was like holding a steel pipe. I was in the hospital for 2 weeks being fed from a nutritionist through an iv that was put through close to my heart. and I was using the bathroom in a jug(it tipped over once, big mess).
But right after surgery they said it had gone well besides the fact I am anemic and They did 2 blood transfusions to no avail. So they fed my IV like 4 bags of iron. maybe more I don't remember much.

But that did help me alot, I felt better then I ever had in my life ever! No pain no nothing! So my doc started me out on humira which I took all up untill like december 09? well I ran out of insurance, that whole ordeal.

Ive been getting into worse condition again, one of my fistulas closed up, the other got worse, Im having flare ups again. My arthritis is literally starting to cripple me and I don't want to do anything. I just moved to Arkansas, and am going to get my licsense so that I can take some AE classes and get my ged and start some college so I can get back on my dads insurance and get this under control, it will also help get me on track for my own insurance.

I am trying to find a job atm and its not going well, along with trying to get into school.

Its taking forever and the pain is hard to cope with. Also Idk why but I have been super bi-polar for some reason, and I honestly cant take all the stress anymore.

Thanks for reading my post.

Hi Truints,

I can relate to that story. My first signs of stomach pains were very subtle, but towards the end of my last year in school they became really bad. But I still carried on, I got a job but had to quit after my first year there because of my Crohn's.

I've been off work since, Hopefully I will be able to get back to normal soon and I hope the same for you.

There is a lot of stress involved, it's emotional and physically draining living with Crohn's, we aren't necessarily depressed though. Not clinicly, we are just down, due to our disease.

We all have up days and down days.

All the best to you.

Liam

 

[Liam]

Another thing we have in common, bar the Crohns, is age. I'm 19 too.

I look forward to talking to you.

Liam

 

[Truints]

Another thing we have in common, bar the Crohns, is age. I'm 19 too.

I look forward to talking to you.

Liam

Thanks for the responce, and although I could have said it was the crohns causing the stress then, I don't think it really is right now. Its just adding to it because I was stressed before it started getting worse again.

Oh and I forgot to add in the first post that when I had surgery to remove the 18 inchs of my intestines I was 5'6" and 70 pounds. I almost died from it. but I got better and am now 5'7" 125 pounds haha

 

[Dexky]

Hello Truints welcome!! I hope you can get back on some kind of insurance and get to treating these things before they get out of hand, if they aren't already!!! I don't know who makes humira but you could try to contact them. Some drug mfrs. have programs to treat those who can't pay. Since you have crohns and ra, they might be interested. Good luck!!!

 

[DustyKat]

Hi Truints and :welcome:

Wow you sure have a lot to deal with. I am so sorry about the insurance thing, I know there are others on here that face the same issues you do so perhaps they can advise you. Here is the link to a thread about Crohns and no insurance, it may have some ideas in there for you...............................

http://www.crohnsforum.com/showthread.php?t=9122&highlight=no+insurance

Stick around 'cause there loads of great info and support. Welcome aboard!

All the best,
Dusty

 

[Astra]

Hi truints
and welcome

Yes you've been thro so much for someone so young, there are loads of young uns on here, you'll make lots of new friends, people who can empathise and offer support.
Interesting about photophobia, I have that too, can not stand bright light at all! I wear sunglasses all the time, even in Winter! Even looking up into the sky gives me blinding headaches! I often get called a mole!
glad you found us, we'll see you around the boards
lotsa luv
Joan xxx

 

[gypsigirl28]

Hi truints and welcome!!!!
Cant you go and apply for some state insurancem, if you are not working you should be able to get it. call around your area and find out how to apply for it. You have to get your medicine so that you can start feeling better before bad things happen.
Even if you call the hospital in your area they would be able to tell you where to go for your area to apply..

I hope you stick around

 

[Lulu]

Hi Truints,

Just wanted to say 'welcome'. I am also 19 but relatively new to all this.

Lulu

 

[cally]

Hey Truints,

I can relate to a lot of your story. It's a vicious, self-perpetuating cycle for me - stress aggravates the Crohn's, which then causes more stress... It's hard to feel like it will ever get better sometimes!

This board is an awesome place to come for support and in the short time I've been here, it's helped me a lot. I think sometimes I just need a place to vent or share my fears, and as supportive as my family and friends are, it's just a wildly different thing sharing with other people who've been there too.

I hope the insurance mess works out for you - if you live in the US, you might want to check out how the new insurance reform will affect you. I believe young adults under the age of 26 are now eligible to be covered by their parents' insurance plans if they do not have job-based coverage themselves...not sure if you need to be a student for this to apply to you or not, or when the new rule takes effect, but it's worth looking into.

-Cally